Raynauds Disease, Lupus

[denden]

Hi Everyone, how are we all doing? Happy New Year!

Winter, winter wish I could skip this season - am sure not the only one who feels this way.

I write this with great care because as a fellow Lupee, too often medical profession forget we do have a sense of humour which sadly in my case is too often misconstrued as depression or whatever 🙆‍♀️ It’s no joking matter

Well, (sigh) the pic attached is the colour of my hands this morning. Dermy was shocked. Lupus flare up in top of head, Raynauds hands and feet and every form of arthritis in spine. Top and bottom of back. 😭😢

Because of long usage of Hydroxychloroquine had to stop taking it to increased dose of Mecaprine increased. Has anyone had this change ? How have you found it? Did you have to revert to Hydroxychloroquine? lower dosage of Mecaprine?

How are you coping with Raynaud’s this winter?

With Brexit fast approaching can anyone say whether their consultant or GP has discussed what the outcome will be re usage of Mecaprine seeing it’s a controlled unlicensed drug?

[Paul_Howard Partner LUPUS UK]

Hi denden ,

If you've not seen it before, we have an article about coping with Raynaud's on our website with lots of information and tips - lupusuk.org.uk/coping-with-...

[denden in reply to Paul_Howard]

Thank you😃 I never saw it going to read it now. Breathe a sigh of relief.

[denden in reply to denden]

Good morning Paul, not that computer savvy and it seems I sent my post yesterday to the wrong community - Fibromyalgia 😳

I am a member of Raynaud’s group but can’t navigate to that page. Not on my list, went to everyone. What an embarrassment! smh.

Please can you tell me how to get to Raynaud’s UK site? I typed the name in the search section but not coming up. Feel so badly

[Paul_Howard Partner LUPUS UK in reply to denden]

Hi denden ,

No problem. If you follow this link, it should take you there - healthunlocked.com/sruk

[denden in reply to Paul_Howard]

Hi Paul, does LupusUK or Raynaud’s group actually has a printed handbook for dummies like myself who has no advocate and does not know what questions to ask or where to begin to talk abt their symptoms? I am very shy and get tongue-tied when faced with any consultant and seem to talk about different things other than ask relevant questions!😞 thereafter weep 😭 most terribly whenever I leave their offices.

[Paul_Howard Partner LUPUS UK in reply to denden]

Hi denden ,

We have an article on our website about getting the most from medical appointments which has tips for questions - lupusuk.org.uk/getting-the-...

It can be helpful to prepare in advance of the appointment and have a short list of questions you would like answered with you. You can then give it to your doctor at the start of the appointment and it can help direct them to discuss what is important to you. It also helps keep you focussed and means you are less likely to forget to ask something important.

[denden in reply to Paul_Howard]

Paul thank you for responding so quickly. Another quick one would you by chance happened to have a list or website of GP in SW London who have experience in Lupus & Rheumy care? They all appear to be outside London.

[Paul_Howard Partner LUPUS UK in reply to denden]

Hi denden ,

I'm afraid we don't have a list of GPs with experience in lupus. I imagine there are not very many at all across the UK. The best you can hope for is to find a GP who listens and keeps a close relationship with your consultant. Due to the very small number of people with lupus a GP will ever treat, they do not generally have a lot of experience with the condition.

You could contact our South London Lupus Group to see if they know of any personally who they could recommend? You can email the group's Regional Coordinator, Laura Sinnett, at [e-mail]

[Sekka in reply to denden]

Before your next appt have a list of questions written down and get courageous about asking them. Hold the list in your hand. Drs don't mind you know. Maybe take a friend with a notebook to write down answers. Good luck! 😊

[miccika1]

I use nitroglycerin ointment 2 percent. It helps greatly. Sometimes i combine it w hotpockets when inside

[denden in reply to miccika1]

Hello Miccika1 how are you?

Thanks for responding please excuse my ignorance but What is hot pockets?

[miccika1 in reply to denden]

It's actually hit hands 😁. Here is the link amazon.com/HotHands-Hand-To...

[denden in reply to miccika1]

😃 thank you. Have also visited RHUK shop and bought socks and gloves to help. This weather is ghastly!

[miccika1 in reply to denden]

I wear wool socks throughout the year. Smart eool socks ate my favorites

[Sekka in reply to miccika1]

Brilliant stuff in cold climates! I live in a warmer part of Australia now but used it every winter when in Sydney or further south.

[EOLHPC]

Hi again denden

My version of childhood onet SLE+RP makes my hands & feet look like your photo...alongside all the usual lifestyle/self-help techniques, what’s helping me now is my rheumy’s low dose losaratan...i forget, have you tried losartan already? I’m one of those patients who can’t tolerate nifedipine & iloprost cause i hyperreact to them & cause my RP is simultaneous with erythromelalgia

🍀❤️🍀❤️ Coco